Pediatric residents' and attending physicians' perspectives on the ethical challenges of end of life care in children.

One issue that has received less attention in present health care protocols is pediatric palliative care (PPC), which is an approach to care starting with the diagnosis of life-threatening diseases in children. It embraces physical, emotional and spiritual elements. Ethical issues are major concerns in today's pediatric health care guidelines and must be considered by residents and attending physicians in this field. The present study was conducted in Namazi Teaching Hospital, Shiraz, Iran. Forty-eight out of 92 pediatricians were enrolled in this research, including 8 attendings, 6 fellows, and 34 residents. The study questionnaire consisted of 66 items. It was built based on previous reliable and validated questionnaire; also the calculated Cranach's alpha was 0.815. Data were analyzed and presented by mean SD and percentage. While seventy-five percent of the participants reported involvement in pediatric palliative care, fifty-six percent did not acknowledge any information about the subject. More than half of the participants perceived the pediatric palliative care services in Namazi Hospital as somewhat or completely satisfactory. Furthermore, thirty-five percent of the applicants stated that they encounter an ethical problem with regard to PPC once a week. There are many challenges to providing decent palliative care for children, including symptom controlling, shifting to end of life care, background dissimilarities of patients, financial restrictions, and acceptance of death. Our applicants believed that offering psycho-spiritual support was the most important challenge in PPC. However, further investigations are needed to determine other requirements for providing a comprehensive guideline on PPC.


Introduction
Palliative care (PC) has been internationally acknowledged as a human right and a public health issue, since it involves themes such as dignity of individuals, universality and nondiscrimination (1). As announced in article no. 25.1 of the Universal Declaration of Human Rights, "Everyone has the right to a standard of living adequate for the health of himself and his family, including food, clothing, housing and medical care and necessary social services…." (2). "Attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity" has also been mentioned in General Comment no. 14 (2). World Health Organization (WHO) defines palliative care as active care for patients who have no curative alternative, and the principal points include control of pain and other symptoms such as psychological, social and spiritual breakdowns in order to improve the quality of life (QoL) (3,4). Pediatric Palliative Care (PPC) could be defined as measures taken to manage children who are suffering from terminal diseases, and it should be applied when cure cannot be achieved by other treatments (5,6). PPC has physical, emotional, social and spiritual aspects and is aimed at helping patients and their families improve their QoL throughout death and loss (5,6). Educating the patients and their families, social support, and involving the affected parties in discussions about planning PPC should all be handled in an open and transparent way (5,7). The emerging paradigm of PPC embraces the concept of applying PPC codes at the primitive stages of life threatening diseases and creating a multidisciplinary system of support around the children and their families, and can be provided in different settings such as the hospital or hospice care unit, school and home (8,9). Usually, children -especially young childrencannot engage in the decision-making process; however, they often know they are dying and they may have treatment preferences (10 -17). An additional aspect of PPC involves families as they are the ones who see the child's discomfort and distress before death, must make difficult choices near and after the point of death, and lose a child and have to experience the sort of grief that is considered the most intense bereavement (18,19). Reports demonstrate that the incidence of emotional disturbances is high in these families (about 50% in at least one family member). Moreover, parental grief has been reported to last deeply for 4 years. Thoughts of suicide, self-accusation and social withdrawal have also been observed in parents who have lost a child (20 -24). Previous investigations have shown that families of dying children need respect and a true relationship provided by the nursing team; in addition, they expect health care providers to treat their children as individual patients with explicit diagnoses, relieve their distress, and give them sufficient care (25). Determining the suitable time to open a conversation about a child's death is challenging, as the beliefs and situations of parents must be well understood. Alleviating the families' feeling of bereavement after the loss could be achieved by multiple means available through palliative care, including psychologists and psychiatrists, clergymen and spiritual aids, and support groups (26 -29). Former studies also indicate that health-care providers' writing condolence messages and attending the memorial service could help families cope with the grief (26 -29). Students and residents normally feel awkward in their confrontations with dying patients. They see death as a medical failure and generally do not perceive palliative care as an obvious component of medicine (30,31). However, educationalists and legislators are paying more attention to the issue of palliative care in order to develop knowledge and investigation in this field (30,31). The present study examined pediatricians' perspectives on ethical subjects related to this field to improve the agenda of palliative care by using a questionnaire covering issues such as pediatricians' uncluttered explanations, decision-making and psycho/spiritual support. The study targeted residents and attendings to find out if they had established maladaptive attitudes or practices.

Method
Population and Data Collection The present study was performed on 48 of the 92 pediatric residents, fellows and attendings of Namazi Teaching Hospital in Shiraz University of Medical Sciences, Shiraz, Iran between December 21, 2016 and May 21, 2017. The population consisted of 8 attendings, 6 fellows and 34 residents (54.2% male and 45.8% female), including 12 first-year, 13 second-year, and 9 third-year residents. The questionnaire was designed based on previously published surveys and consultations with experts in the field of medical ethics (32 -34). In order to evaluate its validity and reliability, the questionnaire was given to 20 residents who were selected randomly. After a month, the questionnaire was given to the same people, and the outcome was evaluated by using Spearman correlation test. Using Cronbach's alpha (< 0.7), the questions that were found to create a significant bias were omitted (Appendix 1); moreover, Cronbach's alpha was calculated for all questions jointly to estimate the consistency of the questionnaire, which was 0.815, and thus the questionnaire was finalized (Appendix 2). The questionnaire consisted of 3 sections. The first section contained the basic demographic data. The second section included queries designed in 5-point Likert-scale questions to assess the level of satisfaction with palliative care services (5 = completely satisfactory to 1 = completely unsatisfactory). The third section was based on Likert-scale responses to assess the participants' general opinion about the topic and ethical challenges to implementation of pediatric palliative care.
The second and third section of the questionnaire consisted of 66 items and were given to participants who were gathered in a conference room on the same day. The data were extracted by a trained person who was unaware of the names and degrees of the people who filled the forms. After analysis of the data, questions that had a significant bias according to the correlation test were omitted. The finalized data were sent for statistical evaluations, and the study protocol was approved by the Medical Ethics Committee of Shiraz University of Medical Sciences, Shiraz, Iran. Participation in this research was voluntary, and participants were assured that their information would be kept confidential.

Data Management and Statistical Analysis
The collected data were reviewed for accuracy and verified by two independent experts. Descriptive statistics were analyzed by mean ± SD and percentage calculations. The discrete and ordinal data were compared using student's t-test, and Spearman's correlation and Pearson's correlation tests were applied. The differences with a P-value ≤ 0.05 were regarded as statistically significant. Statistical analyses were performed using SPSS version 19.0 (SPSS Inc., Chicago, IL).

Results
The data are presented in Tables 1 to 5 below. Table  1 shows the demographic data of the participants. The participants' experiences (both as contributors and as observers) regarding working hours, knowledge and their exposure to palliative care are demonstrated in Table 2. Seventy-five percent of the participants reported involvement in pediatric palliative care, and 38% of the residents, fellows and attendings had had over 20 patients in need of palliative care. An additional 31% had observed more than 20 patients expiring, while 56% of the participants did not acknowledge any information about palliative care. Table 3 presents participants' responses to the questions designed to assess the level of satisfaction with palliative care services. More than half of the participants (84.5% of all medical service providers and 68.9% of those in the ICU) perceived the pediatric palliative care services in Namazi Hospital, Shiraz, Iran as somewhat or completely satisfactory.    dyspnea, pain, nausea, seizures, agitation, anxiety, depression and grief, which can develop differently from one person to another (40 -45). However, palliative care organizations have been mostly focused on physical care and the medical treatment of suffering rather than the psychological, sociological and spiritual aspects of death. Studies have shown that health-care professionals could be frustrated due to compassion fatigue and burnout while providing PPC. This might be due to interaction problems, disagreements on decisions, lack of system support such as excessive workload and workforce unavailability, subjugated grief, and legal issues (6). Palliative care practitioners have reported a feeling of "powerlessness" over dying patients, and that "there is always something more to be done"; thus the pressure of choosing between acting or not acting arises in daily communications with patients as well as in the philosophy of good death (46). Most of our participants (75%) claimed that they practiced PPC but about half of them stated that they did not have adequate information about PPC. Most of the applicants who asserted they had received training in PPC said they had obtained information in this field from medical education resources. Most of the participants evaluated their satisfaction with palliative care services as somewhat satisfactory; however, they were mostly not pleased with the appreciation of medical services by families of dying patients. Our data also revealed that improper palliative care services may be due to a number of reasons such as lack of education in physicians and nurses, insufficiency of educational courses and workshops about PPC, problems in identification of poor-prognosis symptoms, inadequate understanding of the principles of PPC, lack of resources, shortage of research in PPC, lack of time and workforce, cultural differences between health-care providers and patients' families, absence of a systematic approach and role modeling around PPC, and insufficient family education. Our applicants also declared that some problems could be related to the families of dying patients, for instance they might have difficulty deciding on the continuation of treatments, or attempt to obtain information from unauthorized persons. Although most of our applicants admitted to some difficulties in starting palliative care discussions, they said that they mostly informed patients' families about the situation, but they did not involve the children in educational meetings. Insufficient education both in families and healthcare providers may also lead to certain misunderstandings about PPC. The consequences may include: failure to recognize the terminal condition of the disease, emotional complications, inconsistencies in terms of rituals and spiritual beliefs, being sued by the dying children's families, and impairment of the families' trust in the healthcare system. Most of the participants insisted that the families must be the ones to make the decision to start palliative care; however, informing them after deciding to start PPC was also perceived as favorable. Our results also depicted that although physicians mostly provided psychological and spiritual support to the families of dying children, they generally preferred the task to be left to other groups such as nurses and psychologists. Even though decreasing the economic burden of dying patients is a major concern in PPC, it did not appear to be particularly important for our participants. On the other hand, our physicians mostly insisted on the effectiveness and early initiation of PPC in dying patients in order to reduce suffering and end-of-life complications for these patients.
Our participants also perceived psychological and spiritual support to be the most important challenges to pediatric palliative care; thus, further investigations are required in order to provide comprehensive guidelines in this field.

Conclusion
Of the numerous issues that could be considered as challenges to the implementation of PPC mentioned above, the spiritual and psychological aspects of PPC were found to be the most important ones. The results showed that it is essential to educate patients' families as well as health-care providers, and that educational courses and obligatory guidelines would be helpful in this case. Investigations are still highly required to determine other demands and considerations regarding provision of a comprehensive guideline on PPC. The best way to train in this field is to capture the attendings' experiences and bedside teachings.
Totally agree

Mostly agree
Somewhat agree Unsure Disagree The best way to train in this field is to experience the situation individually.
Totally agree

Mostly agree
Somewhat agree Unsure Disagree The best way to train in this field is to participate in related conferences.